Slow to update

I know my hundreds of followers (well, I know there are three or four of you out there) have been eagerly awaiting news of my first chemotherapy experience yesterday, and the aftermath.

I'm delighted to report that it was all boring, boring, boring. I rather expected that the actual chemo administration wouldn't be very exciting, and was glad to have my friend Pam with me, who's been through it herself. But really, all you do is sit there with an IV running into a vein for a couple of hours. The most unpleasant aspect of  the experience was the TWO big screen televisions. I intensely dislike television and don't know what it says about our society that we expect SOMEone to provide entertainment for us at all times.

But I digress.

The next big worry was how the chemo would make me feel. Nausea is the most common side effect, with gastrointestinal distress, dizziness, general spaciness, extreme fatigue following close behind. The nurses at the chemo center said the effects usually begin within 1 - 3 hours after treatment ends. So when Pam brought me home I took one of the anti-nausea pills and then just sort of sat there and waited. I ate the nice little bag of fruit she'd prepared for me. After a bit I had a small dish of ice cream. After another bit I had multiple handfuls of gluten-free chips. All of these activities, plus pacing, of course, took up a couple of hours and I was still feeling no adverse reactions, except being tired.

So at an entirely unseemly early hour, I simply went to bed, slept for 10 hours, and woke up refreshed and feeling great. I worked on a couple of hats to wear when my hair falls out, and when the weather turned warm and sunny I went outside and worked in the garden for hours. Don't worry, I took plenty of breaks and am now pleasantly tired and will probably be in bed before too long. I do love going to bed early, I have to admit, and now I have a good excuse.

Will my luck hold? I'm going to assume it will, and that the love and caring that surrounds me from all my friends and family will continue to hold me in this healing place.

Finally, a plan

The chemotherapy schedule has been established, and I'm not happy. I'd been led to believe that I'd be getting four rounds of chemo, once every three weeks. Nope. It's going to be twice every three weeks. Chemo, chemo, rest, repeat four times. Then we'll take a month off, followed by radiation five days a week for five or six weeks.

Yes yes, I know that everyone reacts differently to chemo, but it is a safe assumption that there will be at least a couple of days after each treatment when I'll feel lousy. When I anticipated that I'd feel bad one weekend out of three, that seemed manageable; two weeks out of three is a whole different ballgame.

Fatigue is an inevitable consequence of both chemo and radiation, and the effect is cumulative. Dr. K plotted a nice little graph for me showing that after each treatment I'll feel bad, will slowly recover, but each time I'll recover a little less and be a little further from my starting point.

Out of the many things that I've been lucky about throughout this, one certainly continues to be that we're moving into spring, not fall. No matter how bad I feel, I can be sitting on my back deck when summer finally arrives. Much better than heading into dreary, rainy, dark winter.

From the very beginning all the doctors have said that I'm healthy and have a good attitude, and will be able to tolerate aggressive treatment. I guess this is what they meant.

Lotsa Helping Hands

I haven't done much with Marcee's Super Strong Support site, but I imagine that's going to change. For those of you who live in the area and want to know how to help, start checking it next week and beyond, once I figure out how all this will affect me and what I'll need. Off the top of my head I can anticipate that I'll probably need meals and maybe rides. And if you like to poke around in gardens, there will be lots to do!

Retrospective

After nearly a week without pain meds and with the slowly-returning flow of "normal" life, I'm gobsmacked to look back and realize that I remember very very little of the last two weeks. Memories of the hospital stay are especially fuzzy; things since then are only slightly less fuzzed. It's especially odd since I could have sworn that I was pretty clear-headed and not affected by the medication.

Just goes to show -- something.

Which about sums up my thoughts right now.

When my primary care doctor told me on January 8 that the chest X-ray showed a mass in my lung, I blinked and said, "Okay." All these weeks and biopsies and tests and finally the surgery later, I feel like I'm still just blinking and saying, "Okay." None of this seems real -- not the cancer, not the recasting of the prognosis, nothing.

It's all been pretty much an out-of-body experience, watching myself march through the essential functions, disconnected from the actual experience. 

I thought I might write a bit about this, but can't find  the words to describe what it feels like to not feel what's been happening, so I'll simply end with the inadequate phrase, "It's weird." 

Gold Star Patient

Being a life-long overachiever can have its down side, but it's a good thing in this world of cancer recovery. I saw the surgeon at Swedish Hospital today, and he's very pleased with my recovery from the surgery. (I can't believe it was less than two weeks ago!) So indeed, with the support of my friends and family, I'm making a speedy recovery.

As is no surprise, the final pathology report does show some cancer in the lymph node in the esophagus. That's consistent with what we expected, and the good news is that it does not seem to be widespread. As the doc said, he's very happy with where we are  now from where he thought things were when we started. This is definitely a situation in which if he's happy, I'm happy.

Now I'll be transferred back to Dr. Kang here in Olympia for chemo. I don't know when that will start, but certainly within a couple of weeks.

My stint with round-the-clock babysitting is nearly over. Actually, it's been more like a non-stop pajama party. It'll feel strange to be alone, and also a positive step toward a return to normalcy.

Again, visitors welcome with advance notice!

And now it's Friday

I do understand it's perfectly normal, which doesn't make it any less disturbing. I've been drawn into an enigmatic vortex in which time / space / cause / effect / linearity -- and a whole bunch of other concepts free-floating around a sparsely inhabited brain -- just don't line up the way they used to.

And if you understood that sentence, I fear for you.

My recovery continues to go well. I'm in very little pain except for the times I work on my lung capacity with the breathing toy, and that hurts. I'm certainly not bed-ridden and can do most things just fine, thank you. I sleep a lot. A lot.

So here's the vortex thing: The world is just ever so slightly tilted and nothing quite makes sense. The unreality of having cancer; of having one of 5 lobes of my lungs removed; of not being able to hold a thought in my head for very long; of not giving a flying fig about local, national, or international events. Much of the time I feel like maybe they goofed in that surgery and took out part of my personality.

Kate, my dear dear friend from from my early 20s (and that was a very long time ago!) is arriving this afternoon to take over babysitting responsibilities from Sherri, and will stay until sometime next week. While the doctor insisted on only 3 days of having someone with me all the time, it's been really wonderful to not be alone through this. Just plain nice to have the company, even though I'm asleep most of the time.

Visitors continue to be welcome -- just call ahead to make sure I'll be awake!

Is anyone reading this? 

I've been told that it's a huge hassle to try to figure out how to leave a comment on the blog. Thank you, Google, for throwing up barriers to communication. Could you maybe drop me an email once in a while to let me know that someone out there is reading this?

Much love to all. 

We interrupt our normal programming to bring you this important announcement

It's nearly impossible for me to believe that Shelly's last post was on Friday, and now it's Monday evening. A lot's happened in a few days!

I was discharged from the hospital about noon on Saturday with a wide assortment of pain medication and assorted other meds to speed my recovery. The attitude towards "pain management" is to keep the patient as pain-free as possible and get me up and walking and moving and doing as much for myself as I can, and the approach seems to be a good one because I feel wonderful.

My basic medication schedule is to take meds every 3 hours, and sleep about half of that. So I'm up and down all night and all day, but I don't need assistance in and out of bed or to or from the bathroom or anything like that. Yes, my brain is a little fuzzy [Okay, a lot fuzzy] but that's usually good for a few laughs.

Shelly takes me for a little walk every day, and thankfully the weather's cooperated. I'm not very hungry most of the time, so her other important responsibility is to make sure that I eat something. This morning I took a shower all by myself, and it rates right up there with some of the world's finest showers.

One of the most unpleasant but important exercises is to breathe into an odd-looking breathing apparatus. I'm sure it has a name, but I don't know it, and it looks unusual enough that I think I might head down some maze I can't get myself out of it I tried to come up a descriptive term. There are surgical stitches all around my right side, from the edge of my ribs in front, curling down and back up to sort of the lower middle right in the back. And while the stitches are tender, they're not nearly as sore as they were just 36 hours ago. AND it's getting easier to move the little indicator on the unnamed breathing toy, which is the goal.

Shelly is staying with me until Wednesday, then Sherri for a few days until the pass is safe for Kate to cross from Northern Idaho. I'm probably ready to start receiving short visits, if you promise to remember that I tire easily. Call ahead of time to be sure it's one of my "awake" times!

Missing everyone -- Marcee

Marcee Unchained

Shelly here again with an update.  Marcee's recovery is amazing, truly amazing.  Early this morning oxygen was removed.  This afternoon the chest tube draining the removed lung area was removed along with the epidural tube administering the  drugs.  And just a bit ago the catheter was also removed.  Marcee is now in her bed unchained.  What a different look this is!

The test now will be how much oral pain killer she will need to keep the pain manageable.  The goal is to keep the pain down enough so that Marcee can take deep breaths and have strong coughs.

There is talk that tomorrow will be the day of release.